Life after Traumatic Brain Injury

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“No trauma has discrete edges. Trauma bleeds. Out of wounds and across boundaries.” ― Leslie Jamison, The Empathy Exams: Essays

Trigger Warning: If you have PTSD this could be a potentially triggering post. If you’re feeling a little under the weather I advise caution to proceed.

This post was going to be about something completely different, I had it planned a few weeks ago and was ready to write but then out of the blue (or not) I got a spike in my Post Traumatic Stress symptoms. For approximately 3 weeks I’ve been rendered immobile, exhausted and terrifed. So the nice positive post I wanted to do has been shelved until a later date and I decided to write about Post Traumatic Stress Disorder (PTSD).

I have a bit of 1 and lots of 2 and 3 and at times they are completely disabling.

My PTS is fortunately not constant, I have had months of normal up and down life but 3 weeks ago it was triggered by something (skating, too many meetings in one week talking about my TBI, pushing myself too much, historical memories of coming out of denial around this time in 2013) and it smashed me right in the face again. I’ve been pondering about how to describe PTSD and it’s almost impossible to convey in words how it feels. I have been having intrusive memories of my accident in the form of strange nasal blockages and a runny nose (apparently, I was vomiting liquid and it was coming out of my nose whilst I was unconcious) and no it’s not a cold, its a very specific feeling I have had before in the year post surgery. I would be on the verge of sleep and my brain would go “Hey, remember when you were on the floor blind before you passed out, that was fun wasn’t it?” I was, up until about 5 days ago having nightmares and waking up with my heart racing, I have constant loud tinnitus and high anxiety as well as palpitations. I am jumping at small noises and have been back under the duvet of inpenatrable safety for almost 2 weeks, this is due to fear and extreme fatigue that seem to swoop in from nowhere. Don’t even get me started on the crying at everything all the time and the crippling lonlieness (this is the absolute worst, no one can help you, you are alone in there like some screwed up version of The Crystal Maze that makes you cry and you dont even get a go in the crystal dome). These are the physical and psychological manifestations and I’m enough of an old hand at this now to realise that it is PTS and not reality, it’s not a danger and it will pass. Knowing this doesn’t make it hurt less but it helps ride the wave.

Seeing these symptoms written down however doesn’t convey how it really feels inside, the actual emotional battering. I would get to the end of each day feeling like I had been beaten up, I lived in my pyjamas again and my skin kind of looked grey and flat. The pain, and I’m talking soul pain here not physical pain, is beyond measure. It’s like a dark hole has opened inside my body and swallowed anything there that resembles human being-ness (if that’s a word). I disconnect with myself, with my partner and the world around me. I have no idea what day it is, what time it is and I feel NOTHING. I don’t love, I don’t find joy, everything becomes a pointless exercise. My thoughts became fast and intrusive and I felt like I was going crazy, things I thought I’d dealt with return as though the progress I’ve made over the last 12 months means nothing. I was literally holding on by my fingertips.

It was at this point I thought I didn’t want to go on anymore and just slipping away quietly was appealing.

I wasn’t suicidal, just tired and scared and worn out. This is when I know I have hit rock bottom.

The thing with rock bottom is you can’t get any lower and the only way is climb back up. Once the crying starts to subside and the thoughts slow down I know it’s weakening it’s grip, I help it along by trying to accept what is and just rolling with it (this is extremely difficult Jedi Zen level work when you are in the vortex). Then I get ANGRY, I love it when the anger comes as it’s a springboard out of the bottom for me, getting angry spurs me on, it helps me access my strength and the higher emotions I want to reach for. After anger I get sad, I’m sad right now but I’m less tired and more able to engage, I even left the house yesterday for a walk and got it together enough to write this. I look at the timeline of all this and feel most frustrated about two things 1) I have absolutely no say in when this happens and 2) the time it eats, I’ve just lost 3 weeks of my life. I could argue those 3 weeks are important healing weeks, they are weeks that help me learn and grow but sheesh, after 29 months it’s ok to get a bit peeved with THE TIME THIS IS TAKING.

I like to try and end on a positive so I will say yes it hurts me more than anything I’ve ever experienced but it passed, I learnt more about my condition and my coping skills, I handled it better than the last one and I absolutely know I am a warrior.

If you are a PTSD warrior like me please reach out and please know this too will pass.

p.s. The next post will be a guest post written by none other than Mummy Braingirl.

This post wasn’t going to be written but it shoved its little head above the ground and demanded it. So here’s a short but sweet bit of writing about my day today.

I’ve been going through what is known as the ‘anniversary effect’ that time of year when your cells remember that something rather terrible happened around this date a few years ago and set about reminding you about it.

I have been caught by anxiety, obsessive thoughts, depression and exhaustion. My surgery site has been fizzing and clunking and throbbing. I seriously thought I had lost it. For real this time. I couldn’t handle the overwhelming assault that appeared apparently out of nowhere.

Then I remembered that I had the same thing last year at the same time and it clicked that I was re-experiencing my trauma. As soon as I realised that, some of the weight lifted. I also stuck to my breathing, feeling feelings and meditating because they are part of my tool kit when things get stormy (also when things aren’t but more so when in distress).

Now normally at this point I give in to the duvet and try to just surf it out but this time I wanted to do something, anything. I was sick of my life being ruled by this unwelcome guest. I made a pact with myself to just bloody DO IT! No matter how scared I felt I was going to do it anyway. I stood in the kitchen and said out loud “F**k you! I’m not playing anymore. I’d rather die trying to live than festering in sadness”. As a result I ended up jogging around the park for half an hour even though my trauma mind was telling me not to. I had a good cry when I got home as pushing myself this way always makes me feel very vulnerable.

So my friends, that is why you find me writing this after completing my first morning at college. I went back to school today to study Counselling. Three days ago I really thought I wasn’t going to make it. But I did it and I feel really proud of myself, really proud. Let’s hope I can maintain it through the unpredictable terrain that brain injury gives me.

It’s 11 months today since my operation. Nearly a year has passed, this is a reason to rejoice, it means it’s getting further away but its also a time to be aware. Anniversaries of such things are often triggering and can cause pain.

I am very deep into the grieving process now. I am finally getting angry, I hate my TBI, I hate what it has done to my life and I hate what my life has now become. I hate that my days are long and boring and sad.

The journey of recovery is not simple as I’ve mentioned before, but the bit that hurts like a very deep soul pain is the re-emergence of symptoms you thought you had dealt with. TBI is the gift that keeps on giving, you don’t get anxious or depressed once, deal with it and hey ho off we go! These states can return out of the blue and as many times as they see fit. You don’t peel a layer of the onion and get a nice fresh one until you eventually reach the middle. The TBI onion has no middle, it just keeps peeling.

I’ve just come out of the tail end of a crippling bout of anxiety. It lasted about 6 days. I would wake through the night scared. I would wake in the morning already shaking and sweating. I was full of fear. Scared of ‘out there’, something intangible I couldn’t put my finger on but I absolutely knew it was out to get me. I was exhausted. I caved and went to the GP and got some magic tablets. You see TBI is not just the injury, it’s the PTSD, the grieving process and the depression. A mixed bag of fun that stops you just bloody well getting on with things.

I’m currently in a crying phase of grief, a full on all out display of ugly face blubbing. It’s good to release it, I need to, but it’s inconvenient and it hurts and it’s the loneliest thing in the world. The crying releases the grief so I shouldn’t suppress it and it can be seen as a positive thing but why does something positive have to be such a pain? Anything positive about this process hurts, it’s gut wrenching and hard.

I’m feeling sorry for myself right now, I am at a point where I can’t see a way through and I feel that I’m going to be ill forever. The only thing I can do is tell myself I’ll be ok (even if I don’t believe it). Otherwise I may just give up.